I have an allergic reaction to pity for Max. When people look at him as if he is pathetic (a.k.a. The Pity Stare), or cock their head and say "Awwwwww..." if I mention he has cerebral palsy -- even as Max is standing there, looking perfectly happy -- my face turns a little blotchy, I have to swallow hard, I get a bit prickly.
I realize that the pity isn't coming from a bad place. Usually, it's misguided kindness. A lot of people out there have no real experience with kids who have special needs and they just think our kids have it bad, so bad. Still, it rankles.
So you can imagine my reaction to the song "Unlucky Child" and the accompanying video about Aden, a 6-year-old boy with cerebral palsy. The singer, Ireland's Marian Bradfield, was inspired to write the song after seeing a documentary about Irish poet and author Christopher Nolan, who had CP and super-supportive parents.
The lyrics and Aden's presence seem incongruous. There's Aden going about life at school and at play, laughing and being his beautiful self. And there are the maudlin lyrics and music telling us all how unlucky he is.
Let me just ask...
Why focus on unlucky?
Do I think Max is lucky for having cerebral palsy? Hell no. Do I choose to make that a focal point of his existence? Hell no. The cerebral palsy is one part of who he is. It does not define his existence and make him -- or Aden or any of our kids -- an "unlucky child."
Why so morose?
Marian has a beautiful, soulful voice -- but could she have seemed any sadder, as if someone had died?
Why thank parents for loving the child?
"Thank you for giving so much love to me, an unlucky child," the refrain goes. Alert! Alert! We parents of kids with special needs love them because they are our children. It's not as if I am doing Max some major favor loving him because he has special needs. Loving our kids is what we parents do. Our love is unconditional.
Why all the focus on what a child can't do, instead of what he can?
"I'll never run with you but I feel your touch just the same..."
"Some kids are better off than me, they can run and jump and play..."
"I'll never speak to you but I hear you call my name..." sings Marian.
Someone should inform her about speech communication apps. And about not comparing kids with disabilities to other kids -- "better off" is subjective.
Also: Aden does not need to be set "free," as if he is imprisoned. Sure, children can look in his eyes and see his "dreams" but they can also try talking to him.
I know, I'm so grouchy about this video, and the singer meant well. How many singers out there have written songs about kids with cerebral palsy? Right. Too bad it's so sad.
A coproducer of the film, Mike Considine of Chicago's Cross Country Productions, first told me about the video. When I emailed my reaction, he said the purpose of the song and video is to "show how children with special needs can enjoy and make the most of their abilities." He reassured me that Aden's parents and Marian spoke, so "everyone understood the meaning of the song." The video crew generously did the project free of charge, because they felt it was an important message to get out there.
The video does provide a glimpse of what it's like to have Aden's form of cerebral palsy, and what it means to parent Aden. The message at the end is positive and awesome. Yet that doesn't balance the fact that the song is laced with woe-is-he pity.
This is what I'd like to tell the people of this world who pity children with special needs:
Our kids have a great love for life. Aden does, as you can see in the video. Max finds joy in the same things other kids do -- ice cream, firetrucks, movies, farts. He is not sad. Do not be sad about him. Do not cast a gloomy shadow onto his sunny presence.
Our kids might not move or talk like other kids do, and may require significant help from their families, but they do things in their own way. Or they don't do them but they adapt. Different is not pathetic. Delayed is not pathetic. Dependent is not pathetic.
Our kids have more determination in their little bodies than some people will have in a lifetime.
Our kids have abilities. Real abilities. You just have to peer past the wheelchairs and the cerebral palsy and the disabilities to discover them. Break out of the pity trance, people, and say "Hi." Encourage your kids to do the same.
Our kids are achieving all the time, something worth celebrating. Sometimes the progress may not seem major to others. But in our world, learning to grasp a spoon or magic marker or articulate a new sound are a Big Deal. We parents are thrilled with the inchstones.
Our kids deserve respect and equal treatment, not pity.
Max is not yet aware of the pity factor, and I hope he never will be: How crushing would it be to know that others think you are a lesser human being? Or that you are an "unlucky child" (who grows into an unlucky adult)? Our kids need every bit of confidence they can get in this world.
As Max's mom, I need empowerment too. And when someone makes my child out to be a sad, unlucky story, it's unsettling -- and sad.
I invite Marian to make a sequel to the song. She can call it "An Amazing Child."
Follow Ellen Seidman on Twitter: www.twitter.com/@LoveThatMax